NYC Hemophilia Chapter

PULSE for Bleeders - Teen Meet Up
2024-04-13 11:00 - 13:00 (America/New_York) | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
PULSE for Bleeders (Promoting Unity, Leadership, and Support for Empowerment) is a new group in the NYCHC Community! PULSE was designed by and for teens in our community to empower other 13-19 year olds to gain independence, improve their collaboration, and cultivate their leadership skills by embracing the bleeding disorders community in our area.
Our next get together will be on Saturday, April 13 from 11 AM to 1 PM at the NYCHC Office (205 W. 37th St.). We will use this time to set goals for our group, work on shaping our advocacy efforts for the year ahead, and start to plan member-specific initiatives.

Pizza will be provided for lunch
Meet new friends from our community
Unaffected teen siblings are also encouraged to attend
Take a leadership role in planning our 2024 Teen Events

The teens will get together regularly to do fun events and activities that they plan. To join the PULSE contact list, sign up below!
Sign Up Here

Infusion Training and Lunch
2024-04-28 11:30 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Sunday, April 28, from 11:30 AM to 2 PM for our Infusion Training and Lunch at the NYCHC Office (entrance is located at 205 W. 37th St., New York, NY 10018).
This small gathering will feature hands-on infusion and injection instruction and guidance from trained medical staff.

Patients of all ages and skill levels are invited to join us, whether you would like to learn more about the infusion process or wish to perfect your skills.
Parents, guardians and other caretakers are also invited to attend to learn how to infuse on someone else (i.e. a child).
The medial team will provide infusion techniques for peripheral IV, port access, and subcutaneous injections.
Please bring your own medication and supplies if you would like to infuse while at the training.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to BDRN for making this event possible.
Register Here

A Day At The Zoo with NYCHC
2024-05-05 11:30 - 17:00 | Bronx Zoo, 2300 Southern Boulevard, Bronx, New York, 10460
Bring your crew to the Zoo for a roaring good time! Join us for a fun day at the Bronx Zoo on Sunday, May 5, beginning at 11:30 AM. This event will allow families to come together to meet one another and connect in a relaxed and laid-back environment.
Agenda Overview:

11:30 AM: Arrival & Check-In | Lot C Entrance (2300 Southern Boulevard)

Please go immediately to the Dancing Crane Pavilion once you check in.

11:30 AM: Community Meet & Mingle | Dancing Crane Pavilion
12 PM: NYCHC Welcome Session and Presentation | Dancing Crane Pavilion

Wristbands for lunch will be passed out at the end of the Welcome Session.
You must be present at 12 PM to receive a wristband for lunch.

Lunch | Please eat inside the Dancing Crane Pavilion
Your ticket allows you to explore the Zoo on your own for the remainder of the day. You can leave at any time. The Zoo closes at 5 PM.
The event will happen rain or shine.

Registration Information

Space is limited.
Registration will end on Wednesday, April 26.
Each registered attendee will receive free admission to the Zoo and a lunch bracelet at no cost.

Please note: this event is for people in your immediate household. Please do not invite extended family members or friends, as resources are limited.

Register Here

Día de las Madres
2024-05-11 11:00 - 14:00 | NYCHC Office, 500 7th Avenue, 8th Floor, New York, NY, 10018, United States
El Chapter de la Hemofilia de NY (NYCHC) invita a las mamás de la comunidad latina con un desorden de coagulación a celebrar el Día de las Madres el sábado 11/Mayo a las 11am con una sesión educativa en la que hablaremos de ‘Abogacía’ y después tendremos una actividad manual donde haremos ‘Diamond Painting’. Almuerzo incluido.
Dirección: 205w 37th St., NY, NY 10018 (Edificio We Work)
Regístrate antes del 3/Mayo con el siguiente link
Para más información comunícate con Nelly Miranda al número (551) 243-3066 o enviando un email a: nelly.miranda@nyhemophilia.org

Educational Dinner: Shared Decision Making
2024-05-22 18:30 - 20:30 | Meaux Space, 305 7th Ave., 17th Floor, New York, NY, 10001, United States
On Wednesday, May 22 at 6:30 PM, we are partnering with Sanofi to host an educational dinner at Meaux Space (305 7th Ave., 17th Floor, New York, NY 10001).
In addition to enjoying an incredible meal, you will also leave with a better understanding of how to partner with your care team to make treatment and management decisions. The educational presentation will be given via a nation-wide live-stream for chapters around the country and will include tips from a physician, a patient’s perspective, and an interactive hands-on activity led by GutMonkey.

The presentation will be conducted in English.
Families of all ages are invited to attend.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to Sanofi for making this event possible.
Register Here

Educational Lunch: Advocacy and Self Care
2024-05-25 11:00 - 14:00 | HARVEST KITCHEN, 269 Columbus Ave, New York, NY, New York, NY, 10023, United States
Moms and teen girls in our community are invited to join us on Saturday, May 25 at 11 AM for an afternoon of lunch, advocacy and self care!
Our afternoon will begin with lunch at Harvest Kitchen (269 Columbus Ave.) alongside an interactive discussion about how you can become your own best advocate in life and when it comes to having a bleeding disorder. After the presentation, we will get manicures nearby at QQ Nails (312 Columbus Ave.).

The presentation will be conducted in English.
Space is limited to the first 15 people who register.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

Unite for Bleeding Disorders Walk
2024-06-02 10:00 - 13:00 | Flushing Meadows Corona Park, Queens, NY, 11354, United States
The New York City Hemophilia Chapter (NYCHC) hosts an annual walk to bring together our community and supporters while raising vital funds. All individual donations raised through this fundraiser go directly to our services and programs. Your dedication and support allows us to assist, advocate, and serve those with a bleeding disorders in the New York City area.
Join us this year for our 19th Annual Unite Walk on Sunday, June 2 at Flushing Meadows Corona Park in Queens! We are reaching higher than ever before with a goal of raising $150,000. Please consider forming a team or joining an already existing team. Any amount you raise makes a difference.
Learn More Here

Sewing and Self-Care
2024-06-23 11:00 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
On Sunday, June 23 at 11 AM, we’re hosting a sewing session for self-care at the NYCHC Office (entrance located at 205 W. 37th St., New York, NY 10018).
Join us to relax, find a new hobby, and discover the therapeutic benefits of creating something with your own hands while!
The event will include:

Sewing: Attendees will learn basic sewing skills before using a sewing machine to make a unique bag that they can take home with them.
Lunch: will be served to all in attendance.
Educational Session: The educational presentation will be held in both English and Spanish and is sponsored by Genentech.

Registration

Space is limited to the first 20 people who register.
You must be 16 years of age, or older.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

Navidad en Agosto
2024-08-03 11:00 - 14:00 | NYCHC Office, 500 7th Avenue, 8th Floor, New York, NY, 10018, United States
El Chapter de la Hemofilia de NY (NYCHC) está organizando una sesión educativa para la comunidad latina con un desorden de coagulación para este próximo sábado 3 de Agosto a las 11AM. En esta sesión, Novo Nordisk nos presentará un tratamiento para hemofilia A.
Después de la presentación, tendremos una actividad de manualidades para prepararnos para la Navidad. El almuerzo estará incluido.
Dirección: 205w 37th St., NY, NY 10018 (Edificio We Work)
Regístrate antes del 30 de Julio con el siguiente link.
Registrar aquí
Para más información comunícate con Nelly Miranda al número 551-243-3066 o enviando un email a: nelly.miranda@nyhemophilia.org.

Afternoon at the Ballgame
2024-08-04 15:00 - 19:00 | Staten Island University Hospital Community Park, 75 Richmond Terrace, Staten Island, NY, 10301, United States
We’re taking you out to the ballgame! Join us on Sunday, August 4 at 3 PM for an afternoon of baseball, entertainment and education as we watch the Staten Island FerryHawks take on the Hagerstown Flying Boxcars!

Agenda Overview

3:00 PM Pick Up Tickets at Staten Island University Hospital Community Park, Staten Island, NY.

Tickets will be reserved under your name. Please get them from the Will Call window at the ballpark.
Once you enter and pass through security, please make your way to our suite for check-in. (More details will be shared before the game begins).

3:15 PM – Educational Presentation Begins. Attendees will enjoy a short presentation to help you prepare your child with a bleeding disorder to safely participate in sports and physical activities. Attendees will gain valuable insights into managing bleeding risks, communicating effectively with school nurses, coaches, and physicians, and making informed decisions about sports involvement.
4:00 PM – Game Begins. All attendees will be seated together in a suite.

Event Information

Tickets: Each registered attendee will receive one free ticket to enter the ballpark and watch the ballgame. Tickets are valid for Sunday, August 4 only. Attendees will pick up their tickets at the Will Call window at 3 PM.
Location: All NYCHC attendees will be seated together in a suite exclusively for our party with indoor and outdoor seating.
Food: Attendees in our group will receive all-inclusive ballpark fare (hot dogs, cheeseburgers, chicken tenders, french fries, salad, popcorn and soft drinks).
Weather: The event will happen rain or shine, unless the venue cancels the game due to inclement weather.
Car Parking: The Empire Outlet Mall lot on Wall Street.
Transit: Staten Island Railway, Staten Island Ferry and the NYC Fast Ferry all go to St. George Terminal, right next to the ballpark.

Registration

Space is limited to the first 18 people to register.
Please register before Wednesday, July 31.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to Genentech and CVS Specialty Pharmacy for supporting this event.

Register Here

Self Care Saturday
2024-08-31 11:00 - 14:00 | HARVEST KITCHEN, 269 Columbus Ave, New York, NY, New York, NY, 10023, United States
Join us for Self Care Saturday on Saturday, August 31 from 11 AM to 2 PM! Women, ages 18+, are invited to join us for an afternoon of lunch, community connections and self care. This is the perfect opportunity to connect with other women who understand your journey while also learn valuable self-care techniques.
Our afternoon will begin with lunch at Harvest Kitchen (269 Columbus Ave.) alongside an interactive discussion about how you can become your own best advocate in life and when it comes to having a bleeding disorder. After the presentation, we will get manicures nearby at QQ Nails (312 Columbus Ave.).

The presentation will be conducted in English.
Space is limited to the first 20 people who register.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

NBDF's 76th Annual Bleeding Disorders Conference (BDC)
2024-09-12 - 2024-09-14 | Georgia World Congress Center, 285 Andrew Young International Blvd NW, Atlanta, GA, 30313, United States
The National Bleeding Disorders Foundation (formally NHF)’s 76th Annual Bleeding Disorders Conference (BDC) will take place from September 12 -14 in Atlanta, Georgia! This event brings the national bleeding disorders community together for educational sessions, valuable networking and social connection opportunities, exciting exhibits and so much more.
NBDF will be accepting travel scholarship applications to attend BDC from January 19, 2024 to February 23, 2024. Learn more about the scholarship.
Learn More & Register for BDC

Educational Lunch & Fall Craft Activity
2024-09-21 11:00 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Women and teen girls with a bleeding disorder are invited to join us on Saturday, September 21 from 11 AM to 2 PM for an afternoon of lunch, educational session and we will work on a Fall Centerpiece at the NYCHC Office (entrance located at 205 W 37th St.).
Join us to relax, learn and have fun together. This event will include:

Lunch for all in attendance.
Educational Session focusing on Women with Hemophilia, presented by Novo Nordisk.
Crafting Activity to make a festive fall centerpiece, conducted by Infucare.

Registration

The presentation will be conducted in English.
Space is limited to the first 20 people who register.
You must be 13 years old to attend.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

"Thriving With Time" Kickoff Event
2024-09-21 14:00 - 16:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Saturday, September 21 from 2 PM to 4 PM for the launch of “Thriving With Time,” a groundbreaking initiative designed to empower aging adults with bleeding disorders. This event will bring together a small group of individuals who are interested in shaping the future of care for our community.
Our event will be held at the NYCHC Office (enter at 205 West 37th St., New York, NY 10018) and will feature:

Lived Experience Expert (LEE) Panel: Hear firsthand accounts from individuals navigating the challenges of aging with bleeding disorders.
Medical Presentation: Dr. Christopher Walsh, from Mount Sinai, will share insights on the latest advancements in bleeding disorder management for those who are aging in our community.
Interactive Workshop: We want to hear from you, and we want our content to meet your needs! During our time together, we will identify key areas of focus and unmet needs in your life.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

Spooktacular Cookie Decorating Extravaganza
2024-09-29 13:00 - 15:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Families in our community are invited to join us on Sunday, September 29 at 1 PM for our Spooktacular Cookie Decorating Extravaganza at the NYCHC Office (entrance located at 205 W 37th St.).
This is a perfect opportunity to connect with other families in similar situations, learn valuable health insights, and indulge in some sweet Halloween treats!
Agenda Overview

Lunch for all in attendance.
Interactive educational workshop to help you navigate life with a bleeding disorder. The workshop will help you learn more about how lifestyle choices can impact short- and long-term health, while also helping you set personal goals for your physical, emotion and social health.
Halloween-themed cookie decorating session where attendees will unleash their spooky creativity, while also enjoying sweet treats.

Registration

The presentation will be conducted in English.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to Optum and Sanofi for supporting this event.
Register Here

Conferencia Latina ‘Unidos por la Sangre’ 2024
2024-10-12 11:00 - 2024-10-13 13:30 | Hilton Newark Airport, 1170 Spring St, Elizabeth, NJ, 07201, United States
Invitamos a la Comunidad Latina con un desorden de coagulación a celebrar juntos el mes de la Hispanidad con NYCHC & HANJ.

Fecha: Sábado 12 y Domingo 13 de Octubre 2024
Lugar: Hotel Hilton Newark Airport (1170 Spring St, Elizabeth, NJ 07201)

Tendremos un evento lleno de muchas actividades para niños, adolescentes y adultos donde aprenderemos y nos divertiremos juntos. Las sesiones de adultos serán en español y las de los niños y adolescentes en inglés (pero contamos con asistencia en español).
Contaremos con habitaciones en el hotel para que descansen por una noche, alimentos incluidos y transporte (en caso de necesitarlo). Este evento es gratuito y esperamos verlos ahí!
Para más información envía un correo electrónico a Nelly Miranda (nelly.miranda@nyhemophilia.org) por si necesitas ayuda para registrarte.
Regístrese aquí

FAB Women's Retreat
2024-11-08 16:00 - 2024-11-09 15:00 | Courtyard by Marriott, 3 Pembroke Pl, Edgewater, NJ, 07020, United States
The New York City Hemophilia Chapter (NYCHC) is partnering with the Hemophilia Association of New Jersey (HANJ) to host our 3rd Annual Females and Bleeding (FAB) Women’s Retreat! Join us for an overnight stay at the Courtyard by Marriott in Edgewater, NJ from Friday, November 8 to Saturday, November 9 for a weekend of educational sessions, social activities, health and wellness workshops, breakout sessions, and much more! The focus will be education, personal growth, and networking.
Agenda Overview

Start: Friday at 4 PM.
End: Saturday at 3 PM.
Agenda: Will be shared with registered attendees one week before the event begins.
Hotel: Hotel rooms will be provided for Friday evening at no cost to attendees.
Meals: All meals during the retreat are included.

Registration

This retreat is free to attend.
Space is limited to only 30 women who meet all three of the following qualifications:

Live within the Hemophilia Association of New Jersey or the New York City Hemophilia Chapter geographic coverage areas.
Are at least age 18 or older.
Are affected by a bleeding disorder in at least one of the following ways:

is diagnosed with a bleeding disorder, or,
is a carrier of a bleeding disorder, or,
is the spouse of someone with a bleeding disorder, or,
is a parent or legal guardian of someone with a bleeding disorder.

Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to Octapharma for supporting this event.
Register Here

Open Enrollment Webinar
2024-11-13 19:00 - 20:00
The NY State Bleeding Disorders Coalition is hosting an interactive webinar on Wednesday, November 13 at 7 PM to help you make the best decisions when selecting or renewing your health insurance plan for the upcoming year.
Health insurance expert, Ruthlyn Noel-Joseph, will provide an overview of key factors to consider in choosing or renewing a plan during the open enrollment period this year. She will cover various types of insurance, including employer-provided, Medicaid, Medicare, and Marketplace options. Plus, you’ll have a chance to get answers to your questions!
To register, contact NYSBD Coalition Coordinator, Jessica Graham, at (716) 380-2940 or jgraham@nysbd.org.

Education Day
2024-11-17 10:00 - 16:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us for Education Day on Sunday, November 17 from 10 AM to 4 PM at the NYCHC Office (entrance located at 205 W 37th St.).
Education Day is our largest event of the year–packed full of learning, connection and festive cheer as we wrap up the day with our Holiday Party.
Educational Sessions

Evolution of Bleeding Disorder-Related Challenges Across the Lifespan
How to Prepare for an Emergency
Pain Palette: Exploring the Colors of Discomfort
Parenting: Reframing the Diagnosis
AI and Bleeding Disorders
Understanding Insurance

Special Activities

Lunch will be provided
Inventors Club for kids
Mentor Meetup session
Holiday Party
Cookie decorating contest

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

Preparándonos para las fiestas
2024-11-20 19:00 - 20:00
El Chapter de la Hemofilia de NY (NYCHC) está organizando una sesión educativa en español para la comunidad latina con un desorden de coagulación para este próximo miércoles 20 de Noviembre a las 7pm via zoom. En esta sesión, Novo Nordisk nos presentará: Vivir con un trastorno hemorrágico, enfoque en el bienestar mental.
Después de la presentación, prepararemos ‘Coquito Puertorriqueño’ el Chapter enviará los ingredientes a sus casas para esta actividad.
Regístrate antes del 11 de Noviembre con el siguiente link.
Regístrate aquí
Para más información comunícate con Nelly Miranda al número 551-243-3066 o enviando un email a: nelly.miranda@nyhemophilia.org.

LLegó la Navidad
2024-12-18 19:00 - 20:30
El Chapter de la Hemofilia de NY (NYCHC) está organizando una sesión educativa para la comunidad latina con un desorden de coagulación para el Miércoles 18 de Diciembre a las 7PM vía zoom. En esta sesión, Novo Nordisk nos presentará un tratamiento para hemofilia A en español.
Después de la presentación, decoraremos galletas e invitamos a toda la familia a participar.
Regístrate antes del 2 de Diciembre con el siguiente link.
Regístrate aquí
Para más información comunícate con Nelly Miranda al número 551-243-3066 o enviando un email a: nelly.miranda@nyhemophilia.org.

Almuerzo y sesión educativa en Español
2025-02-22 11:45 - 14:30 | Rosa Mexicano, 9 East 18th St, New York, NY, 10003, United States
Invitamos a los adultos de nuestra comunidad latina con un desorden de coagulación a disfrutar un almuerzo y una sesión educativa en Español el sábado 22 de Febrero en el restaurante ‘Rosa Mexicano – salon Sky Room East’ (9 East 18th St, NY NY) de las 11:45 AM a las 2:30 PM.
El tema de la sesión será: El Camino de Juan Pablo. Este evento es patrocinado por Bayer y presentado por Margarita Llibre Rogers y Juan Pablo Lopez Padilla.
Para cualquier duda, comunícate con Nelly Miranda por teléfono al número (551) 243-3066 o envía un email a: nelly.miranda@nyhemophilia.org.
El espacio es limitado, regístrate antes del 17 de febrero.
Regístrese aquí

Listos para recibir la Primavera
2025-03-04 19:00 - 20:00
El Chapter de la Hemofilia de NY (NYCHC) está organizando una sesión educativa en español para la comunidad latina con un desorden de coagulación para el martes 4 de Marzo a las 7pm vía zoom. Esta sesión es presentada por Novo Nordisk.
Después de la presentación, haremos una canasta con flores de tela, preparándonos para la primavera! El Chapter enviará una caja con los materiales a su casa para esta actividad.
Regístrate antes del 26 de Febrero con el siguiente link.
Regístrese aquí
Para más información comunícate con Nelly Miranda al número 551-243-3066 o enviando un email a: nelly.miranda@nyhemophilia.org.

Washington Days
2025-03-05 - 2025-03-07 | Hyatt Regency Washington on Capitol Hill, 400 New Jersey Ave NW, Washington, DC
The National Bleeding Disorders Foundation (NBDF) Washington Days will be held in Washington, DC from Wednesday March 5 to Friday, March 7.
This is an excellent opportunity for you to share your story with your elected officials and their staff while also asking for them to support policies that are important to the bleeding disorders community. Travel assistance is available to those who need it.
Learn More & Register Here

Educational Lunch & St. Patrick's Day Craft
2025-03-09 11:00 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Sunday, March 9 at 11 AM at the NYCHC Office (entrance located at 205 W. 37th St., New York, NY 10018) for lunch, an educational presentation, and a St. Patrick’s Day themed craft.
The event will include:

Educational Presentation: The educational presentation will be held in English and is presented by Novo Nordisk.
Lunch: will be served to all in attendance.
Craft: Attendees will make a St Patrick’s Day themed centerpiece craft that they can take home with them, sponsored by InfuCare.

Registration

Space is limited to the first 20 people who register.
You must be 16 years of age, or older.
The last day to register is March 5.

Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.

Register Here

Albany Days
2025-03-15 - 2025-03-17 | Hilton Albany, 40 Lodge St, Albany, NY, 12207, United States
Join bleeding disorders advocates from across New York State for Albany Days from Saturday, March 15 to Monday, March 17. Whether you are new to advocacy, or you’re an experienced advocate, you can help us make a difference!
This three-day program will feature a fun and interactive advocacy training on Saturday and Sunday followed by meetings with your Senator, Assemblymember or their staff at the State Capitol on Monday. New to advocacy? It’s easy! You will be paired with seasoned advocates during your meetings so you have nothing to worry about.

Individuals and families of all ages are encouraged to participate.
Hotel accommodations and food during the program will be provided at no cost.
Travel assistance is also available, if needed, to help you get to and from Albany. Learn more and apply for travel assistance here.

Apply For Albany Days
New to advocacy? It’s easy! You will be paired with seasoned advocates during your meetings! If you have any questions, please contact Jessica Graham, NYS Bleeding Disorders Coalition Coordinator, at jgraham@nysbd.org.

Community Conversations: Is Camp Right For My Child?
2025-03-20 18:00 - 19:00
Wondering if camp is the right fit for your child with a bleeding disorder? We’re here to help! Join us on Thursday, March 20, at 6 PM for an interactive webinar all about camps in the bleeding disorders community.
Our presenters, Dr. Julia Golier, psychiatrist, and Dr. Regina Legere Buccellato, psychologist—both NYCHC Board Members and parents of children with hemophilia who have attended bleeding disorder camps—will share their expertise and personal experiences. They’ll offer professional insights to ease those “letting go” jitters while providing firsthand advice from parents who’ve been in your shoes.
Register Here

Infusion Training and Lunch
2025-03-23 11:30 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Sunday, March 23, from 11:30 AM to 2 PM for our Infusion Training and Lunch at the NYCHC Office (entrance is located at 205 W. 37th St., New York, NY 10018).
This small gathering will feature hands-on infusion and injection instruction and guidance from trained medical staff.

Patients of all ages and skill levels are invited to join us, whether you would like to learn more about the infusion process or wish to perfect your skills.
Parents, guardians and other caretakers are also invited to attend to learn how to infuse on someone else (i.e. a child).
The medial team will provide infusion techniques for peripheral IV, port access, and subcutaneous injections.
Please bring your own medication and supplies if you would like to infuse while at the training.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

HFA Symposium
2025-03-27 - 2025-03-30 | Sheraton San Diego Hotel & Marina in San Diego, CA, 1380 Harbor Island Drive, San Diego, CA, 92101, United States
The Hemophilia Federation of America (HFA) is heading to Indianapolis for their annual Symposium in sunny San Diego from Thursday, March 27 to Sunday, March 30 at the Sheraton San Diego Hotel & Marina in San Diego, CA.
They will have dozens of sessions for blood brothers, blood sisters, children, parents, caregivers and more, along with great opportunities to connect with the new and old friends from around the country. A limited number of travel scholarships are provided by HFA. Learn more about their scholarship offerings by clicking here.
Learn More and Register

In The Know Treatment Decision Making Summit
2025-04-06 10:00 - 14:30 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Our 5th Annual In The Know Treatment Decision Making Summit will be held on Sunday, April 6 from 10 AM to 2:30 PM at the NYCHC Office (enter at 205 W. 37th St., New York, NY 10018).
With treatment options changing rapidly for our community, and some newly-approved options now on the market, it is extremely important for patients and families to stay informed of the latest options available to them. This Summit will allow bleeding disorder patients to learn more about specific products or treatment options in order to help our community make informed decisions regarding their choice of care.
Learn more about this event by clicking here.
Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here
